Top 10 Things Never to Say to a T1D Parent

FacebookTwitterGoogle+TumblrPinterest

They mean well. They really do. But many people just don’t realize that the seemingly “helpful,” reassuring, or casual, off-hand remarks they make upon learning that your child has type 1 diabetes just…aren’t. And who can blame them? They probably know as much about type 1 as you did before your son or daughter was diagnosed. Still, some of the comments T1D parents hear can be supremely frustrating or even downright hurtful. So here’s your chance to set these well-intentioned friends, family members and acquaintances straight — by sharing this list as a public service announcement or by picking up some ideas for clever, tactful ways to respond when you hear one of these doozies, courtesy of Jeniece Trast, R.N., C.D.E., M.A., clinical research nurse manager and certified diabetes educator at Montefiore Medical Center in New York City.

1. “Well, at least it’s not fatal.”

This type of statement minimizes all the work parents do to manage their child’s diabetes — and ignores the fact that many parents do worry very much about their child’s long-term health and safety. “Diabetes is a challenging disease to manage because it involves food, insulin, blood sugar monitoring, exercise and so much more,” says Trast. “People who are able to manage their diabetes well are usually healthy individuals who lead long successful lives. However, there is always the risk of low and high blood sugars no matter how well controlled a person’s diabetes is, and both of these things can be life-threatening if not properly treated.”

Parents, consider responding: “I am so glad that my child is happy and healthy right now. However, diabetes unfortunately can cause medical emergencies that can be very dangerous, so we work hard every day to try to prevent those.”

Well-wishers, instead try: “I know managing diabetes is a challenge, but I’m so glad it’s treatable; please let me know if there is anything I can do to help.”

2. “Have you tried this natural remedy?”

In addition to demonstrating lack of knowledge about type 1, this comment can also come off a little judgmental. “Parents are willing to do whatever they can do make their kids’ lives better and pain-free,” Trast explains. “This comment makes it seem like they aren’t doing everything they can for their child. Natural remedies, which are often seen on websites and commercials, are not effective treatments for type 1 diabetes alone. Even if there is some benefit to a natural remedy, insulin is still required.”

Parents, consider responding: “I have (or haven’t) heard about that remedy, but right now, the only treatment for type 1 diabetes is insulin, and my child needs it to live.”

Well-wishers, instead try: “I know insulin is necessary for treatment, but sometimes I read about complementary remedies that can help with general health — let me know if you’d be interested in hearing about them sometime.”

3. “He’ll probably outgrow it.”

Type 1 diabetes is a lifelong disease that never goes away no matter how well it’s taken care of. This comment is not only inaccurate, it also hints that a child’s symptoms are perhaps just a phase or even something that he’ll learn to overcome once he’s more mature. That can feel frustrating and condescending to both the child and his parents.

Parents, consider responding:“Diabetes is an autoimmune disease in which the pancreas and insulin cells have been attacked by the person’s own immune system. Diabetes is a lifelong disease that he will unfortunately not outgrow. We will take good care of him and he will grow with it!”

Well-wishers, instead try: “Even if you get used to it over time, I can only imagine how challenging it is to deal with a lifelong condition. If there’s anything I can do to help, please let me know.”

4. “It could be worse.”

This statement tries to compare apples to oranges, pitting diseases against each other. “This is very hard to hear because it dismisses the feelings the child and parent may have,” explains Trast. “Diabetes is a difficult disease and — although it should not stop the child from doing most things — sometimes diabetes can feel like a real burden for the whole family. It’s unfair to ever compare illnesses.”

Parents, consider responding: “There are some terrible diseases out there. Diabetes is tough, too. We have to factor it in to our thoughts 24 hours a day, every day. Most of the time, we manage it and don’t let it stop us from anything, but sometimes it is really hard.”

Well-wishers, instead try: “You and your family do such a great job. If you ever need support, I’m here for you.”

5. “We need to get her to remember all her supplies.” — the school nurse or other caregivers

How many of us were even able to remember our homework every single day as children? “Diabetes requires time management, organization, education, troubleshooting, clinical judgment and so much more,” Trast says. “It is a difficult disease for a parent to manage, let alone a child. When others expect a child to do things they have not learned or are not ready to do because they are not yet old enough, parents may feel defensive and upset for their child.”

Parents, consider responding: “I understand it’s frustrating when supplies are not where they need to be. Our family deals with diabetes as a team, and together we need to help make sure she always has the supplies she needs to be safe and healthy. Let’s work out a solution that’s age-appropriate for her right now.”

Caregivers, instead try: “Sometimes she does not have her diabetes supplies with her, and I was wondering what we all could do to make sure we have the supplies we need at school.”

6. “Should she be eating that?”

People who make this comment may think they’re doing parents a favor, pointing out sugary food they believe could harm a child with diabetes. In reality, they more likely appear to be judging the food parents are serving and implying that they know better. “Parents spend so much time with their medical team (including diabetes educators and nutritionists) that they are well aware of foods their children can eat and what insulin they should administer,” says Trast. Today, children with type 1 diabetes can typically eat any food — including candy and other treats — as long as it’s covered by a corresponding dose of insulin.

Parents, consider responding: “Thank you for your concern, but people with type 1 diabetes can eat whatever they want as long as they take insulin for any carbohydrates. Too many sweets are not good for anyone, but having type 1 diabetes is not a reason to avoid a particular food.”

Well-wishers, instead try: Saying nothing at all!

7. “Well, my Great Aunt Sally had diabetes and…”

Was it type 1 or type 2 diabetes? Was it before modern medical advancements in diabetes treatment? At best, “Great Aunt Sally stories” usually offer little in the way of useful tips or advice. Worse, they may cause parents unnecessary anxiety. “Comparing people’s diabetes is unfair and often the cases are very different,” Trast says. “Parents want encouragement and support. Few parents will benefit from hearing a sad story about another person with diabetes,” especially if it took place in another time and place, under very different circumstances.

Parents, consider responding: “I’m sorry to hear your aunt had diabetes. Although I do not know your aunt, there are different types of diabetes and treatment has changed over the years. My child’s diabetes is manageable, and we plan on taking good care of it so he can do everything he wants to do and lead a happy and healthy life.”

Well-wishers, instead try: “I only have a little experience with diabetes, because a family member had it. I would love to learn more about how you handle it, if you have the time to talk.”

8. “Do you still give him insulin?”

Again, ignorance of type 1 diabetes can be tiring to parents who come across it regularly — even though it’s understandable. “This statement implies that there is going to be an end to diabetes,” explains Trast. Type 1 isn’t like a cut or scrape that, if you take care of it well enough, will eventually get better and no longer require medicine. Wondering how a child has been doing lately? Ask about his life rather than his medical treatment.

Parents, consider responding: “Yes, insulin is the only treatment for diabetes. Just like your body produces insulin in the pancreas all day, we have to give my child insulin multiple times a day.”

Well-wishers, instead try: “Does he still love karate or is it soccer these days?”

9. “At least it’s not type 2; I have to watch my diet with type 2.”

As if there’s nothing challenging about managing type 1! “Although type 1 and type 2 diabetes have many similarities, they are often treated very differently and affect people and their families differently because of that,” says Trast. “Different” doesn’t mean one’s harder or easier, better or worse. On the plus side, the person who makes this comment is aware that no food is off limits just because of type 1 diabetes!

Parents, consider responding: “I’m sorry to hear you have type 2 diabetes. Although our child can eat most things, we still have to calculate everything he eats, monitor blood sugar levels throughout the day, and administer insulin multiple times a day. Diabetes is tough, isn’t it?”

Well-wishers, instead try: “I know type 1 and type 2 have different challenges, but maybe we can still be a support to each other as two people both dealing with diabetes.”

10. “I could never give shots to my child.”

So T1D parents who are able to give their kids injections must be cold and unfeeling, right? “This comment makes it seem like the parent is ‘bad’ or uncaring because they’re doing something that may hurt their child,” says Trast. “Parents don’t enjoy giving insulin injections, and it’s one of the hardest things they have to do. However, it’s necessary to keep their child alive, so of course they are going to do it. No need to make them feel worse about it.”

Parents, consider responding: “It’s not something I enjoy doing, but I would do anything to keep my child healthy and alive, so it is a must. Although it seems scary to you now, I know you would also learn to give the shots, and it gets easier over time.”

Well-wishers, instead try: “You do so much to take care of your child’s diabetes so well. I’m so impressed.”

Disclaimer: The experiences and suggestions recounted in these articles are not intended as medical advice, and they are not necessarily the “typical” experiences of families with a child who has type 1 diabetes. These situations are unique to the families depicted. Families should check with their healthcare professionals regarding the treatment of type 1 diabetes and the frequency of blood glucose monitoring.